I write as an outlet, as two of our children battle cancer, positive for Li-Fraumeni Syndrome. I cannot say how often I have heard the phrase, "I cannot even imagine..." but hope to give a glimpse of what this is like...and to reassure you that it is not all bad, despite the challenges.

Wednesday, June 12, 2013

Going to New York

I went to sleep last night, listening to the sound of a steady rain and the feel of the summer air coming through the window. I woke to the rustling of the birds, a chickadee trill, the stirrings of the waking forest. Then came the suburban sounds...a neighbors dog barking a friendly greeting, a car passing the house. This was followed by the more domestic sounds as Cinder jumps up onto the girls bed. They murmur at first, then quietly talk and giggle together down the hall. I listen to the sound of Dan's breathing as he sleeps next to me. All distinctly the sounds of this place, of these people. Of home. In the stillness, I soak it all in and know that it is beautiful, and a blessing.

I get up to start the coffee, put the breakfast in the oven, and finish the preparations for our departure. All the while, I wonder what it will be like when we return. When will we return? My mental calendar officially ends on Thursday, a phenomenon that I privately call "scan day syndrome." I find that the uncertainty that the future holds, while familiar, is something I am starting to get a bit anxious about again, mostly because I am no longer so terribly busy organizing things. It is upon us now, with nothing left to buffer the space.

I had a date with Lauren yesterday. When we first told her about having Li-Fraumeni Syndrome and the scans and screening that she, Brent (and likely I) would have to do in order to find cancer early, I assured her that while we had to do hard, unpleasant things, we would do something special as well...like go to a movie or get our nails done, as a special treat to make up for it. In the year and a half since I made that promise, the only special treat she got for doing scans... was brain surgery. I am not exactly stellar as a parent in this regard.

She is amazingly patient, this daughter of mine. And uncomplaining, mature beyond her years. But, I don't want to push my luck. And I really wanted have a date with her, to touch base uninterrupted, and spend time seeing how she really is, before I ditch her again. I ditched her just weeks after that 'special treat' brain surgery that I mentioned...for Brent to have his first surgery in New York, thus avoiding amputation. We were gone nearly 2 months. I am heading there again, this time knowing now that it will be a long time.

We chat about the next several weeks as she gets her pedicure, so grown up. Even though she is only 10, I ask her input about how she feels about scans...wait for me to return, or go with someone else? We talk about oncology camp, and how much fun that will be, even without Brent...she is outgoing and confident. I have no worries about her, but I think I will email to confirm which familiar faces will be there. I know that Ceci, her nurse, will be there, and she will look out for her. We are so fortunate in this.

She selects my polish color, a bold pink. I would never have picked this color, but I tell her that it would be a splash of Hollywood in the generally bland pallate of Sloan Kettering. It would remind me of her, and that she would be with me. Lauren really likes this. We decide to do this again, and make it our quarterly date. I feel like she is going to be fine.

Olivia will be fine as well. We have prepared, talked about the plan. We will all talk on the computer. She will come visit in a few weeks to her 'birthday hospital' and we will have a date... All hurt of separation was forgiven with the revelation that New York City has a playground, and my promise to her that I will take her to the playground when she visits. She can wear my perfume and smell like me, if she misses me. That is all she wants. It is simple when you are 5. She is a pretty happy kid.

Alex will be busy with his sisters, and no doubt socializing as teenagers are prone to do. He will enjoy visiting with my sister who is going to spend time at the house while Dan is away. We have neighbors who have kindly volunteered to take him to swim team. If he is active, he is fine. He will be pretty active.

Leaving is still hard, but after having a nice breakfast together, it is time. We go. The lilacs are about finished blooming.

.

.

.

I pick up the drive through the mountains of Pennsylvania, which is 300 brutal miles of nothingness, while Dan dozes and Brent is watching a movie. We have the strangest weather pattern, and seem to be skirting the edge of a front, because we have rain, and dark November-feeling clouds, but we frequently open up to blue and sunshine.

I see a rainbow, which makes me happy, thinking about a friend in Hawaii, who frequently talks about them. I have never been to Hawaii, but I suspect that rainbows are more common there with the more frequent rains. I see another rainbow, a partial one, seeming to fall from a cloud. It is almost a stylized rainbow, cartoon like. I am amazed, delighted.

Every turn brings another rainbow...to the right...right in front of us....double rainbow... To the left....interrupted rainbow... They are everywhere, a frenzy of rainbows, for five solid hours. As we approach NYC, I am positively giggling, and Dan and Brent are annoyed with me for my constant exclamations, because I just cannot help myself. Dan said that we were driving through a rainbow factory...I like to think of it as a rainbow escort, wrapped up in promise and reassurance. I finally said that the only thing that would turn off this parade of rainbows was the sun setting.

And as we breeze through the Lincoln Tunnel, with no wait, the reflection of the sunset on the clouds over the city is gorgeous. Traffic is light, relatively speaking and we make the drive across Manhattan with ease. As I pull up to Ronald McDonald House, someone else pulls out, leaving street parking for us right in front, which is the equivalent of finding a $100 bill on the sidewalk, because we will not have to move it to the garage until Thursday. I feel giddy and reassured as we check in.

The travel here was easy, and I am hopeful that the rest of it will be blessed as well, full of encouragement, beauty, promise and hope.

2 comments:

Rainbows do a heart good... You needed each and every one because yours is so full, and understandably, heavy right now. Sending thoughts and prayers from Texas. May the rainbows continue to follow you & your precious family.

About Me

Our pediatric cancer adventure was complicated by the discovery of a genetic mutation (Li-Fraumeni Syndrome) which predisposes two of my children to all forms of cancer. While Brent, now 16, battled osteosarcoma (bone cancer), we found that Lauren, now 13, had a rare brain tumor. Since our initial problems in 2011, Brent developed two subsequent cancers (Metastatic melanoma and AML--a leukemia that required bone marrow transplant) and Lauren had a second brain tumor removed.

I share both the challenges and the blessings of this life, pretty freely.